I went to medical school in the previous millennium. Back in the days when the standard dress code was to wear a shirt and tie. To tell the truth, it didn’t matter too much what you wore as it all had to be hidden underneath the doctor’s white coat that we would wear. I probably would’ve gotten away with wearing just a collar and tie underneath my white coat. I would’ve needed to have appropriate pant legs and footwear but probably could’ve gotten away with wearing pyjamas underneath the coat. Of course, this never happened as I was as sheep-like as everyone else and conformed to the standard dress code.
Once I graduated I became braver in terms of dress sense and I started wearing cartoon ties and otherwise quirky ties. I built my collection during my travels. I bought ties in places like Taiwan, Thailand and Kaitaia. Halfway through my first year of work, I went on a clowning trip in China led by Dr Patch Adams. This was followed by a reunion with my childhood friends in South Korea. On my return, I came to a decision. I decided to retire. All of my standard ties. I would only wear my cartoon ones from thence on. Over the next 21 years, I continued to wear Disney characters, Looney Tunes, Superman, Popeye, Fish, and many more.
We’re not the driver of the journey. We are more like a GPS. We are here to help them in their travels. The driver is in charge of where they want to go and can indicate which route they would like to take to the destination. We are there to help highlight hazards along the way as this is a journey we help others with all of the time. We can point out obstructions or detours along the way. We can give a head’s up about what may be troublesome up ahead.
We don’t want you to have any surprises, we will advise you which route may be safer. The aim is for a smoother journey. You need to know what is going on and we will be there to help you navigate your way through foreign territory. We can map things out for you and will make useful suggestions. Whatever happens, we will be there for you and will do our best to understand and fulfil your needs.
Tell me what you need and we will strive to make things happen for you. This is an important final excursion that you are taking and we will be alongside you each step of the way. We know what changes to expect as we enter different phases of the trip. We are also there to provide support to the traveller’s loved ones to ensure they are kept up to date with each leg of the journey. To guide them through the transition points as everything continues to change.
All of the above is what you can expect from our self-caring rechargeable battery-powered Gentle Palliative Steadying system.
“My family are originally from Guandong Province, Meixian County.”
“Mine too.”
“Wow, we could be cousins. How are you feeling?”
“Not good, I’m short of breath, can’t relax. Pain in my throat, and I’m having trouble swallowing. I keep on choking, even on water.”
“You must be exhausted.”
“Yes, I just want to sleep. I know what is going on, I don’t have much time left. This cancer has been really bad.”
“Yes, it has made you really unwell, I can see your arms are swollen.”
“Yes, that just happened yesterday, everything got worse in the past week, it’s too fast.”
“I’ve prepared my funeral plans, I’m ready to go, I know what is ahead of me.“
“We’re going to get you through this, and we’ll look after your family as well.”
“Do you or your son have any questions?”
“No, not at the moment.”
“You just let me know if you want to talk about anything, or if your family have anything they want to know.”
“Okay, thanks doctor.”
“I’ll adjust your medications now.”
“Thank you, I’ll see you later.”
Our families had originated from the same county and province of China and had then moved to different parts of the world as part of the Chinese Diaspora. Many years later we both met each other in the hospice inpatient unit. Having something in common really helped me to establish rapport.
He was far from home, many kilometres away from his tribal lands. He had come to the big city for cancer treatments and to be closer to the few family members who lived close to our catchment area. The treatments had not worked despite everyone’s best efforts. His condition deteriorated at an increasing pace. The Oncologists thought he was dying, that he only had days left to live and they arranged for him to be transferred to the hospice for symptom control and likely end-of-life care.
We managed to calm down his physical pain and nausea with urgency. When he was more comfortable his appetite improved. Everything was going well, we started making arrangements for where he would go next. Along with his family, he had chosen a hospital-level care facility that would be easy for his out-of-town family to visit.
On the day of his planned transfer, without warning, he collapsed and died. Death inside a hospice is not an unusual event. For Maori folk, after death, the usual preference is for the body to be embalmed and then for it to lie in state at a family home for a few days. Then it will make its final journey to the mana whenua/tribal homeland for burial.
Our patient and his family were all from out of town. They did not have a place of their own they could use to host a small funeral. They asked if it would be okay for his embalmed body to return to hospice for them to hold a tangihana/funeral.
We discussed it as a team and said “Sure, let us know if we can help.”
His family were grateful to be able to farewell him together in their traditional way.
In all my years of working in hospice, there have been more than four weddings on-site, but this was the first funeral.
Any medical history is incomplete if the social history is not assessed. An important part of the social history is occupational history. What line of work a person did can tell you a lot about them. What jobs they held and for how long can provide a clearer image of who the person is. It can indicate what level of education they have had. Also, it can provide clues as to how they have done financially. Where did they work, locally or overseas? How important was their job for them? What level of loss has occurred as they are no longer able to work? Is there any unfinished business? Is there anything that needs to be sorted out in relation to work? What has been important to them up until now? Was there a work-life balance or otherwise?
The above information gives you a better idea of the human being that is in front of you and their place in society and the world. What is the best way to communicate with them, and how can you discuss things in terms that they will be able to follow? Talking to an engineer is different to talking to a chef. Talking to someone who has devoted many years to home-schooling their children is different to the conversation you’d have with a truck driver. The conversations are aimed at finding clues about who the person actually is. What analogies would help improve understanding? What kind of language to use or what level of detail to share? What is important to them at this stage of their life? What do they still have to sort out? How can you best build rapport?
How can we connect with them? What do we need to know about them in order to take better care of them? What did they spend a big chunk of their adult life doing? Also what hobbies do they have and how passionate have they been in pursuing those activities. One human trying to get to know another human, trying to connect with them to help them out. Striving to make a connection.
Any medical history is incomplete if the social history is not assessed. An important part of the social history is occupational history. What line of work a person did can tell you a lot about them. What jobs they held and for how long can provide a clearer image of who the person is. It can indicate what level of education they have had. Also it can provide clues as to how they have done financially. Where did they work, locally or overseas? How important was their job for them. What level of loss has occurred as they are no longer able to work? Is there any unfinished business? Is there anything that needs to be sorted out in relation to work? What has been important to them up until now. Was there work-life balance or otherwise?
The above information gives you a better idea of the human being that is in front of you and their place in society and the world. What is the best way to communicate with them, how can you discuss things in terms that they will be able to follow. Talking to an engineer is different to talking to a chef. Talking to someone who has devoted many years to home-schooling their children is different to the conversation you’d have with a truck driver. The conversations are aimed at finding clues of who the person actually is. What analogies would help improve understanding. What kind of language or what level of detail to share? What is important to them at this stage of their life? What do they still have to sort out? How can you best build rapport?
How can we connect with them? What do we need to know about them in order to take better care of them? What did they spend a big chunk of their adult life doing? Also what hobbies do they have and how passionate have they been in pursuing those activities. One human trying to get to know another human, trying to connect with them to help them out. Striving to make a connection.
I had never met her before but I had been told she was originally from the Netherlands. I wanted to make her feel welcome to our place and I had selected an orange face mask to wear. I was told of her arrival and asked my Dutch colleague how to greet and welcome her in Dutch.
A faded washed out looking lady sat in her wheelchair, accompanied by her daughter, son and his wife. Her skin looked translucent and had a slight grey tinge to it. I bent down so that our eyes were level and said.
Hoi daar (Hello there) Welkom (Welcome)
She looked up at me with her dull eyes and there was the slightest hint of a smile in the corners of her mouth.
We wheeled her into the bedroom and with great effort and assistance from her son she was able to climb into bed.
I asked what she had done for work, her son could see his mother was too weak and tired to answer and said, “Mum was a nurse, in the last half of her career she worked in mental health.”
She needed a line inserted into her arm, this had been difficult before the chemotherapy had made the veins hide even more.
To put her at ease I talked about my first job after graduation. Psychiatric house officer, where I had to take care of the physical needs of over 40 inpatients. A busy job because a lot of the patients had many physical ailments and were overall people who did not take care of themselves well.
I recounted the first patient I ever examined. A man who was naked and stood in the centre of his bed with his arms outstretched in the crucifix position. He couldn’t follow my instructions as at the time he was incapable of conversing in any of the languages of the Planet Earth.
My next task was to take blood from a patient with suspected Neuroleptic Malignant Syndrome. This is a rare but potentially lethal condition that can occur in unlucky patients who are on anti-psychotic medications. Blood tests are needed to confirm the diagnosis. The problem I was faced with was the patient had been in a catatonic state for over a week. He was cast on his bed in the foetal position with both of his arms flexed towards his chest. I wasn’t able to access the veins of his arms at all. The first blood test I ever took as a new doctor was from the patient’s right foot.
These stories elicited a quiet chuckle and another wisp of a smile from my patient, who said, “My patients were always up to many antics. I can see you’ve been up to some yourself.”
I smiled and winked at her as I left her to spend some time with her family.
She was dozing off in her chair and her partner answered, “She’s okay, just really tired.”
“You had a lot of pain last night, you still look sore at the moment.”
“No, she’s not in pain, sometimes her face just looks like she’s in pain. She’s pretty good at the moment the cancer lumps in her tummy were sore before, now they are okay.”
“You were on the pump before, did it help your pain?”
“Yeah, it did help my missus’s pain, but then we went to the traditional healer and he told us to stop the pump. Since then the pain hasn’t been as bad as it was. We stopped the pump last week.”
“You’ve needed seven extra doses since yesterday. I’m worried we aren’t controlling your pain enough.”
“No, you are doing all right. My missus will tell you if she needs more. She wants to call the shots.”
“How long you guys been together?”
“16 years.”
“Cool, how did you meet?”
“At church. She was a church girl, me I was a wannabe gangster. My missus straightened me out. Now I’ve become a workaholic, I work for my family, that’s the most important thing for us. To give our kids a good upbringing.”
“You guys make a good team.”
“It’s my missus, because of her I changed for the better, it took her five years but she sorted me out. She’s my boss.”
“Were you guys scared of hospice before you came in.”
“Yeah, we tried not to come in for the last couple of weeks. We wish we had come in sooner. She hates the hospital. She wasn’t sure about hospice.”
“Are you still scared of hospice.”
“Nah, it’s a good place, you guys are taking good care of her, and the whole family. We feel safe here, you guys listen to us. In the hospital they just kept giving us bad news, and then more bad news. And just when we thought we’d heard it all, even more. My missus just wants to make the most of each day, but we know how unwell she is. This place would be a good place to be at the end. She feels safe here, you guys treat us really well. We are still praying for a miracle.”
“You keep on praying. We just want to try to make her more comfortable. I think we could do better with her pain control, we may need to start the pump up again.”
“My missus wants to stay off it, but if things became too bad, if you thought she’d really need it, it would be okay to start it again.”
“Okay, we’ll try to keep her off it, try to do things her way as much as possible, but if things get really bad, we’re not going to let her suffer.”
“Yeah I just want her to do what she wants.”
“Do you have any questions?”
“Yeah. Do you think you could help us, ummm, we’ve been together a long time, and we had planned to get married last year in our backyard. But then she got really sick, and ended up in hospital, again and again. Do you think you could help us arrange for someone to come in to marry us? We just want it simple.”
“Yeah sure man, we can help, it’s been a while since we’ve had a wedding here. We’ll get the team going, we’re all keen to help. Just remember it’s your wedding, not ours.”
“Thanks, maybe if we get married then she’ll have a miracle.”
One of the prognostication tools that I use in my day to day palliative care practice is a new form of medical imaging. We don’t have to worry about radiation exposure no X-rays are involved. You can keep all of your earrings and piercing jewellery on as there are no magnetic fields involved. It doesn’t rely on ultrasound technology either, in fact it doesn’t even need a power source. No it isn’t the latest version of Google Glass, or the latest VR/AR technology from Meta. My patients don’t need to be referred anywhere and the scan can occur on site, with no waiting list. We don’t even need anyone to review the imaging and interpret the findings.
Not every healthcare institution is lucky enough to be as well resourced as we are. We have a special scanner which can indicate to us which patient is the most unwell in the hospice inpatient unit. A handy second opinion as prognostication is usually difficult to get right, at best it is an educated guess. We have a mobile PET scanner which makes it easier for us to assess how unwell a person is. We just need to provide it food and water, and occasional access to the local veterinarian. Yes our little CAT scanner has four legs and a tail and is named Charlie.
His sister and nieces pushed him in via wheelchair. His skin was a yellowish grey colour. According to his family it had been a huge change from when he had arrived in town last week. Then he had been well and was able to dance with his nieces. Now he couldn’t walk without assistance as he was too weak and fatigued.
He’d been diagnosed with end-stage cancer only months ago, and arrangements had been made for him to go into residential care. As he deteriorated, his elder sister and her daughters wanted to look after him. They picked him up from his residential care facility and moved him into his elder sister’s house in Auckland.
Over the course of his first week with his family he became more unwell. Nerve related pain from his cancer worsened and led to his hospice admission. His medications were adjusted to make him more comfortable. The family arranged for a reunion. His elder sister came down to see him.
All he wanted to do was sleep. He had no appetite.
He enjoyed the family reunion, it had been years since he and his siblings had been in the same room together.
On his final day he became comatose. His older brothers came to see him in the morning, after travelling two hours by car. They talked about when they had all been young. I explained that he was critically unwell and could die at anytime.
His sisters came back to see him, and within minutes he had taken his final breath.
The largest health and disability system reforms for a generation will start in Aotearoa New Zealand (ANZ) starting in July of this year. One of the major changes is the creation of an independent Māori Health Authority. Its important task is to address the health inequities and disparities which lead to Māori people dying seven years earlier than other residents of ANZ. It has taken us 182 years to reach this sorrowful state and a real change of mindset is required if anything is to change at all. It can feel almost too big. What can I do to make things better? What difference can I make as an individual when the system has been designed to continue producing the same results? Nothing changes if nothing changes.
During a visit to one of the local marae/meeting place years ago my hospice staff were asked, “What do you have at your hospice that would make Māori feel welcome?” We struggled to answer the question. “Well here is your wero/challenge. How can you make us feel more welcome? Show us some evidence, don’t just talk.”
Thus began our journey of discovery, we needed to be educated. Bi-cultural competency training was arranged for all staff members throughout all levels of our organisation. For both clinical and non-clinical staff. We learnt about the adverse effects of colonisation, and the poison of institutional racism. We are encouraging each other to use more Te Reo Māori words in day to day hospice life. Bilingual signage has been placed as we seek a more open cultural direction.
We are singing Māori waiata/songs together every Wednesday morning. Today we were graced by a special impromptu guest. One of our tangata whenua/Māori inpatients walked into the room where we were singing. She had a big smile on her face as she joined her voice with ours. It was a privilege to be able to sing alongside her for those few minutes.
We have only just begun our journey of discovery but it is making a difference already. Another tangata whenua patient we cared for recently told me, “I started laughing as soon as I walked in. The wairua/spirit of your place felt good. I feel comfortable here. I trust you guys.”
It’s a small step in the right direction. Are you going to join us on the hīkoi/walk?
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